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Looking For Some Support.


IrishEd

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IrishEd Newbie

I'm 20, and I figured out that I have celiacs about a year ago after suffering from progressively worsening symptoms for the past three years and many doctor's visits. I am having a rather hard time dealing with this on top of the other things I have to deal with. I have been in and out of the hospital all my life, having had 9 major surgeries, developmental disorders requiring speech therapy and extensive work to develop fine motor skills, possible brain damage, and even one point where the doctors where sure that I was going to die as just an infant. I also have alpha-1 antitrypsin deficiency, which was discovered when I was just a baby.

Aside from the medical conditions, I also was a shy kid who had to deal with an older sister with aspergers, who had been a huge strain on my family. Along with that, and some bad choices in friends to confide in has left me with self-isolting and unable to really trust anyone, even those who really care about me.

I am pretty much at my wits end and am sort of tired of having to deal with everything, since I have never really had many healthy times in my life and I already have a fair amount to deal with and, partly through my own action, no one I can really turn to that understands all this and is willing to be there for me.

I don't know what I really am expecting from this website. But, I could always use some help on this. Part of the problem I am really having is just, it is very hard to have a social life and connect with people when so much of the food and places my friends and others go to have gluten. It is especially tiring for me since I am extremely uncomfortable talking with people and then to always have to deal with and describe celiacs to others, on top of the others things I have, is just getting to be to much.


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eatmeat4good Enthusiast

Welcome IrishEd!

It sounds like you are having a difficult time of it right now.

Sorry you are feeling so overwhelmed and stressed about socializing. I find that it is hard to eat with people too without explaining gluten intolerance. But really, I am doing that way less than when I first was learning it live with it.

Are you feeling better when you eat gluten free like in the last year? I found that my social anxiety and depression were significantly reduced after going gluten free.

Wanted to give you some support and wish you well.

GF BRO Newbie

Hey man,

I can relate to you a bit. I'm 21 and have had my fair share of medical issues. Had a couple of tumors removed from the back of my head in the parotid gland over the past few years. I've had to deal with being anaphylaxis to nuts, peanuts, and coconuts my entire life. While I can't say that my experiences are the same as yours, I understand what its like to deal with having a social life and coping with stupid medical issues that are out of your hands. Pertaining to the gluten thing, at first it seems like you are trapped and stuck. I was bugging out at first. However, I lead a very active social life at college now. Sure, you may have to do some research at restaurants before you go out, but there is almost usually something you can eat when you are out with friends. Big dinners are the only thing that scare me and if the restaurant can't help me out, I eat beforehand and have a drink or two instead. Everybody who I am friends with knows my deal and are pretty cool with the idea. It also makes for easy conversation with the ladies, especially when I tell them how this diet has allowed me to keep fit. Not saying its easy bro, but its really manageable. I look at all my medical problems not as curses, but character traits that make me more aware and cognizant of my surroundings. At the end of the day, theres always worse stuff to have to deal with. Hang in there dude. Gets better.

eatmeat4good Enthusiast

Outstanding reply gluten-free Bro! :D

lizziebee Apprentice

I'm 20, and I figured out that I have celiacs about a year ago after suffering from progressively worsening symptoms for the past three years and many doctor's visits. I am having a rather hard time dealing with this on top of the other things I have to deal with. I have been in and out of the hospital all my life, having had 9 major surgeries, developmental disorders requiring speech therapy and extensive work to develop fine motor skills, possible brain damage, and even one point where the doctors where sure that I was going to die as just an infant. I also have alpha-1 antitrypsin deficiency, which was discovered when I was just a baby.

Aside from the medical conditions, I also was a shy kid who had to deal with an older sister with aspergers, who had been a huge strain on my family. Along with that, and some bad choices in friends to confide in has left me with self-isolting and unable to really trust anyone, even those who really care about me.

I am pretty much at my wits end and am sort of tired of having to deal with everything, since I have never really had many healthy times in my life and I already have a fair amount to deal with and, partly through my own action, no one I can really turn to that understands all this and is willing to be there for me.

I don't know what I really am expecting from this website. But, I could always use some help on this. Part of the problem I am really having is just, it is very hard to have a social life and connect with people when so much of the food and places my friends and others go to have gluten. It is especially tiring for me since I am extremely uncomfortable talking with people and then to always have to deal with and describe celiacs to others, on top of the others things I have, is just getting to be to much.

dear irishEd i understand how frustrated you are im 13 and i was diagnosed in the begining of the year with my heartt condition which is a major struggle im on medication 3 times a day (and have to take it at school which can be a hassle) ive missed so much school for it and on top of that i was in and out of the emergency room and hospital with chronic stomach pains at the begining of the month i was in the hospital for a week because of the pain and how bad it was but the docters kept insisting it was only a virus even when the tests for all the viruses came back negative i was so confused and scared when my mom brought up exploratory surgery because of my families long list of health issues they only denied it i was so frustrated on day 7 i was finally released yet still in pain about 2 weeks later i was in the emergency room because i had the same pain but worse it was so bad it woke me up from my slumber in tears and on the verge of screaming because it was so bad i was taken to the emergency room they did the cat scan and my insides came back inflamed the docter came in and said my symptoms sound like celiac confused i asked what that was and after he explained it to me it made perfect sense that night for dinner i had a lovely bowl of pasta he told me we couldnt do the test there so we had to go to a special lab my stomach docter told me he thought it was just me still suffering the after math of a bad virus but said he would do the celiac test any ways a couple of days later my mom got a phone call from the docter telling us that the blood work came back positive extatic to know what i had, had a name and wasnt just in my head but i was heart broken to know what i had would be such a struggle on the 28th of february im going in for my endoscopy for further testing im very very nervous and dont know what to expect but im glad their are other people like me i was afraid that i was alone and sadly at home i am but people like us need to stick together ;)

  • 2 weeks later...
happybfree Rookie

Hey man,

I can relate to you a bit. I'm 21 and have had my fair share of medical issues. Had a couple of tumors removed from the back of my head in the parotid gland over the past few years. I've had to deal with being anaphylaxis to nuts, peanuts, and coconuts my entire life. While I can't say that my experiences are the same as yours, I understand what its like to deal with having a social life and coping with stupid medical issues that are out of your hands. Pertaining to the gluten thing, at first it seems like you are trapped and stuck. I was bugging out at first. However, I lead a very active social life at college now. Sure, you may have to do some research at restaurants before you go out, but there is almost usually something you can eat when you are out with friends. Big dinners are the only thing that scare me and if the restaurant can't help me out, I eat beforehand and have a drink or two instead. Everybody who I am friends with knows my deal and are pretty cool with the idea. It also makes for easy conversation with the ladies, especially when I tell them how this diet has allowed me to keep fit. Not saying its easy bro, but its really manageable. I look at all my medical problems not as curses, but character traits that make me more aware and cognizant of my surroundings. At the end of the day, theres always worse stuff to have to deal with. Hang in there dude. Gets better.

Wow! Thank you gluten-free BRO! Great post! I especially like that line about character traits...

Eatmeat also has a true point. Probably because of the energy I have now, I can socialize better than ever before, and (even) especially off gluten I can have a great social life.

I got used to just ordering a salad everywhere I go. The joke is that I'm gonna one day turn into one. Or at least create a new green coloured race.

Things get better :)

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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